What Does ‘Phenylketonurics: Contains Phenylalanine’ Mean?

If you have ever purchased gum or soda that contains the artificial sweetener aspartame, you've seen the warning Phenylketonurics: Contains Phenylalanine. Phenylketonurics sounds like an alien race - surely they can't be human! Well, I happen to be the mom of a Phenylketonuric. And today, December 3rd is Phenylketonuric Day! Who knew?

When my daughter was born, like all other babies her heel was pricked and a few drops of blood were whisked away to some unknown lab. A few days later, we got the call... "Your daughter may have some issues. We are sending you to Riley Children's Hospital in Indianapolis for further testing." Our hearts sank. Tears flowed. We immediately jumped on the internet to investigate what fate held for our child, even though her doctor specifically told us NOT to. Yeah... flippin' right, doc! It was completely overwhelming and we had no idea what this crazy sounding 'thing' was and how it might impact our life. We just knew it would severely limit her diet. Think about it... Thanksgiving dinner, birthday cake, 4th of July cookouts, three meals a day, snacks, field trip lunches... OMG I'm having an anxiety attacking just thinking about it.

My daughter was diagnosed with Phenylketonuria (also called PKU). To sum it all up, PKU is a genetic metabolic disorder in which her little body can’t break down an amino acid called phenylalanine. Amino acids help build protein in your body. Without treatment, phenylalanine builds up in the blood and causes mental and physical health problems.

We have to limit the amount of protein she ingests and because aspartame has high amounts of phenylalanine in it, the artificial sweetener is off limits. Over a year later, and my little Phenylketonuric is happy and healthy. She eats a diet similar to what most of us should eat - high in fruits, veggies and super grains and low in meat. We sneak a hot dog now and then - she produces more of the enzyme needed to break down phenylalanine than some with PKU so occasional high protein days are okay.

We are grateful that we can control her disorder with diet and thankful to the folks at Riley for their kindness and expertise. And we have been blessed that she can have a pretty normal diet because those with more severe cases have to order special grain heavy foods that the phe has been chemically extracted and only a handful of vegetables. I can't imagine the struggle.

Now, the next time you see the Phenylketonurics: Contains Phenylalanine warning, think of a blond-headed baby girl, not an alien!